One in 1 Hundred. Living, loving and learning more every day from our child with a congenital heart defect (CHD). We share our stories here in hopes that they will help you along your own journey. CHD Blog, TGA, ASD, VSD, Pulmonary stenosis,COARC,artery stretching surgery.
Kristen Tragethon.

WHAT'S IN A NAME

The One in 1 Hundred comes from the statistic – the number of babies born with a congenital heart defect every year. When you are pregnant you hear a lot of statistics and they don’t really hold any true meaning to you personally until you become that 1 out of 100 and your life is forever changed. Once you are that 1, I don’t think you ever look at statistics quite the same again. Kalvin has not only touched my heart, he has kissed my soul. He has changed me for the better in ways I didn't know existed and for that I am truly blessed. I tried to explain this to a pregnant heart mom and I don't think she quite understood until her heart baby touched her very own soul. Here in this blog, I will try and share with you all our experiences and it is my hope that they will help and or provide you with some comfort. Thank you for listening.

Thank you to all those who have all ready made a donation-Emilio Straubel. We greatly appreciate your support. This is a great cause and one that is so near and dear to our hearts.

We are walking to support the Children’s Heart Foundation, the goal of The Children’s Heart Foundation is to bring health, hope and happiness to children impacted by congenital heart defects, the number one birth defect in the United States. We accomplish this goal by funding the most promising research to advance the diagnosis, treatment and prevention of congenital heart defects.

Most people are unaware that Congenital Heart Defects (CHDs) are the most common birth defect in America, affecting approximately one in one hundred, or 40,000 newborns each year. CHDs are responsible for one third of all birth defect-related deaths and sadly 20 percent of children who make it through birth will not survive past their first birthday.

Although a child is born every 15 minutes with a CHD, research continues to be grossly under-funded in America. Of every dollar the government spends on medical funding, only a fraction of a penny is directed toward congenital heart defect research.

As the country’s leading organization solely committed to CHD research funding, The Children’s Heart Foundation dedicates itself to bringing health, hope and happiness to children and families impacted by a CHD.

CHF has funded over $5.3 million of vital, life-saving CHD research since its inception.

Please consider joining our team. Just click the link above and donate and / OR sign up-it will be lots of fun!! Every donation counts.

﻿Kalvin was scheduled to get braces on his teeth back in January. You may remember this post: A Silver Lining. We delayed the braces a few times for various reasons, but we finally went through with it. The braces are not to straighten his teeth, but to move the lower teeth and jaw back.

Originally, the orthodontist talked about putting a palate expander in his mouth, but due to Kalvin's overactive gag reflex, they decided the braces would be a better option at this time. Kalvin has a severe under bite that is causing his top and bottom teeth to rub together which is causing damage and actually moving his upper teeth and jaw. We could not post pone the application any longer-the teeth and gums are progressively getting worse..

Kalvin was such a brave boy! He did not complain at all. He was very excited to get the colors yellow and black on his braces...like the Boston Bruins. Kalvin is going to his first Bruin's game this weekend where he is excited to show his support with his new smile!

They applied the bottom braces today. The wire will be applied in a few weeks.

The top braces will be applied once the bottom teeth have moved back a bit a bit.

﻿ ﻿

After braces.

﻿What a year 2013 has turned out to be for Kalvin!

Update: Kalvin had his top braces applied in January 2014! Read all about it here.

Finn was born! I can't believe our baby is now three! Finn is so much fun. I really wish I could freeze him right here at this age. He is just so cute. The things he says. The things he does. His exuberance. His anger. One of the ways we celebrate everyone's birthday in our family is with a dinner at the local Mexican Restaurant-Casa Blanca. The kids absolutely love it there and even have their favorite waiter, Juan!

When it is your birthday at Casa Blanca, you get to wear the birthday hat-a sombrero! Finn was a little unsure of the birthday hat this year, but he did end up wearing it while the wait-staff sang and danced around our table.

We also had a family celebration at home. More yummy cake and ice cream! Hmm, this boy has no problem with chocolate cake!!

Kalvin, not so much chocolate cake...yet. He is still covering his mouth.

Finn loved his presents this year. He couldn't wait to open them up and see what was inside. He also loves birthday cards! He reads them all and is very curious who they are from. So cute!

Happy Birthday Littles...we love you!!

Finn is a little "miracle" himself. Most medical doctors said it was impossible for me to have another child, but four years later he was conceived. I worked with many people to bring Finn into this world naturally, but the one who originally made me believe it was possible was Julia Indichova. Julia's work is amazing. Julia is amazing. I worked with Julia diligently for three years. Walking the journey towards my baby those three years with Julia and other Fertile Heart Mommas, made me a better person and a better mother. The tools I learned from Julia can be applied to many more life challenges. Julia's work is itself a miracle.

Today here in Boston, we witnessed once again, how precious life is. You truly never know what your last words to someone might be. I read this to Kalvin tonight and emphasized how much I love him. What a very special person he is. I am very lucky to have had this opportunity. Our thoughts and prayers are with everyone suffering tonight.

Taken from: For you, Just Because You're Very Special to Me

by Doug Pagels

Kalvin fell asleep while playing with Charlie. He is still recovering from Influenza B. He gets very tired by dinner time now-so unlike him.

I was reading to Kalvin last night from my wonderful book For You, Just Because You're Very Special to Me - Thoughts to Share with a Wonderful Person by Douglas Pagels. I have mentioned this book before here: We Don't Always Get Chanced Like These. Kalvin gets very excited when I read to him from this special book and; therefore, so do I! Kalvin always seems to have something nice to say when I am through reading. Last night was no different, just...well you'll see.

I began:

In this World

There are a few absolute gems in this world.

They are the people who make a tremendous

difference in other people's lives... with the

smiles they give,

Insert Kalvin blurting out, "Catherine."

I continued:

the blessings they share, and

the way they warm the hearts of everyone

around them.

Kalvin pops in another, "Catherine."

I continued:

Those rare and remarkable people are so

deserving of every hope and happiness.

"Catherine!"

I went on:

They are the people who are incredibly

unique, enormously thanked, and endlessly

appreciated for everything they do.

And one of those wonderful,

deserving, and one-of-a-kind people

is most definitely... you.

"And Catherine," Kalvin finished.

﻿﻿

So you see, not exactly the recognition I was looking for, but sweet and heart warming just the same. That is, as long as Catherine conitnues to be sweet and nice to my boy!﻿

﻿ Kalvin has been home sick from school all week with Influenza B. Read Influenza B Most of the time he has been sleeping, but he has also watched much more tv than I would like to admit…or tell my husband about. Last night on the Disney Channel, we were watching and an episode of the sitcom Jessie. Jessie thought her boyfriend was going to propose to her, but it ends up being a big misunderstanding. I could see Kalvin’s mind spinning as he watched it all unravel. He looked a bit concerned. Perplexed perhaps. I waited for him to say something to me about all that had just transpired between Jessie and her boyfriend. He didn't. Those that know me, know it was no easy task. I am not good at waiting quietly. But I did. I waited. And waited. Mostly because I wasn't sure what was mulling around in his head and I didnt' want to raise concern that wasn't already there. He never commented or asked any questions about the episode.

Later in the evening after Kalvin's shower, he told me how happy he was that he had asked Catherine to marry him before his friend Gabe did. He said, "Gabe was so jealous when I told him the news that I asked Catherine to marry me."

He went on, "Gabe was really bummed because he said he was going to ask Catherine to marry him!" Kalvin reported this all with a big smirk across his face. He looked as if he had just won a big prize.

“Mom,” he continued, still smiling ear to ear. “When I asked Catherine to marry me, I felt like water was being poured over my hair. It felt all tingly. It felt soooo good. I was so excited she said yes.”

Is it the protective motherly instinct in me that has me just waiting for the other shoe to drop? Waiting for his little heart to be broken.

Ughhh, I never even thought of the flu. It is April and flu season has passed. Right?? Guess again. The doctor took one look at Kalvin and said, "That is the best telltale sign-a patient lying on the exam table, let's do a flu test." Kalvin was fine with a swab in his nose.

Kalvin had been begging me to take him to the doctor. The doctor provides him with so much comfort - this is a good thing; especially with so many doctor visits in our immediate future for his leg surgery. See Artery Stretching Surgery. By Tuesday morning Kalvin was miserable. His temperature still was only 99.3, though. He said his throat hurt. He said everything hurt, but especially his leg. I have to admit, I was a little suspicious. He was complaining about his leg hurting, but to me that didn't make sense. I was thinking it had to do with his leg not getting enough blood flow, but it was his right leg he was complaining about - his good leg. Then I thought he just didn't know what hurt and used his leg as an "excuse" because he knows it has some medical issues.

Turns out, Kalvin was completely right on. First of all, my thermometer is broken and the poor boy had a temp over 103. That's right. 103 degrees. Mother of the year, right here! He has Influenza B. The flu. The real flu. It comes with an achy body - achy joints and muscles. Hence, the leg pain. Kalvin never complains, but this has been tough. He cries a lot and feels miserable. And YES, he had the flu shot. Apparently, there is a strain of Influenza B that wasn't included in this year's flu shot. Great. Lucky us.

Luckily, Kalvin slept most of the day. The big concern right now is getting the Tamiflu in him. He won't take it orally. He sniffs it out in any food or drink I put it in which really doesn't matter because he flat out won't eat anything. It took me 3 hours to get him to chew his 2 1/2 Tylenol tablets - and he likes these. It is a viscous cycle. He has no appetite and feels yucky so he won't eat or take any medicine therefore, he feels worse. Weak and tired because he, well, has the flu and because he has not eaten. We worry about his heart. If he gets progressively weaker, what will that mean for his heart? For his recovery time?

When we arrived at the doctor's office, the nurse took his temp and weight and had us wait in the exam room. She immediately flipped around when she looked at his weight and said she had to retake it. I interrupted and said, "He has lost some weight, is he weighing around 66 pounds?"

"Yes," she replied. "But it was 76 pounds in January. That is a lot of weight for a child to lose. Do you know why?"

I went on to explain his weight loss. He has been very active this winter, but he also has stopped eating sweets, which is a good thing. Right?? Slowly, he has stopped eating much of his meals, though - not a good thing. We think it is anxiety. He is afraid of throwing up, not of getting fat. Or so we think...he was getting into the shower tonight and his father commented on how skinny he looked. In response to his father's comments, Kalvin jumped into the shower, smiled and said, "You can never be too thin!"

I know everyone is thinking this comes from me, the only woman in the house, but honestly I never talk to him about dieting. He use to love to do Jillian Michaels exercise DVDs and he would repeat some of her motivational lines, but he hasn't done a Jillian workout in quite some time. I honestly think he is just anxious and the fear of throwing up after eating too much has lingered from the Cheesecake Factory incident. Remember: Weight Loss

The doctor had a few great suggestions - cream cheese on crackers and other ways to sneak in some calories. The doctor also explained to Kalvin that he cannot continue to lose weight. He can maintain the 66 pounds - that is a good weight for his height, but he cannot lose anymore. He said he understood and would eat more. He then came home and basically refused to eat. He lost 2 more pounds and really had me scared. A phone call to the doctor scared him strait and he began to graze on a few morsels...phewwww. He is up one pound -weighing in at 65 pounds! Hopefully this weight gain will continue. The funny thing is, the more I harass Kalvin about eating, the more I am putting into my mouth! And I certainly cannot afford the extra calories!! I have single handedly taken down his entire Easter basket ...help me!

﻿﻿ Kalvin started complaining on Easter that his scar hurt. His Zipper. Hmmm, I have never heard him say anything like this before. I didn't really think it was anything heart related, but then I started to think...the stent. We have an appointment on May 8th to make sure the stent is in place. What if it moved? What would happen? Then he said his arm hurt. My stomach tightened. Isn't that a sign of a heart attack? I tried not to let my imagination run wild, but Kal never complains.

Lucky for us, for me, my mom is a cardiac nurse and was on her way over for Easter dinner. A quick exam by nurse Grandma and we discovered that the scar and arm pain were most likely a result of swinging the new and heavier baseball bat at baseball practice Saturday night. Phewww.

But that wasn't Kalvin's only symptom. He has had some noticeable weight loss since his cath lab on January 16th. Kalvin has been more active this winter thanks to his dad. They have gone skiing and or skating every weekend on top of his already busy schedule of karate and PT.

The weight loss really began after a visit to the Cheesecake Factory. Kalvin enjoyed a big pasta dinner followed by some delectable cheesecake and then...and then some heaving. I don't know if you have ever been in a Cheesecake Factory restaurant, but the tables are very close-intimate dining with your neighbors. I glanced to my left and then to my right and envisioned Kalvin throwing up at the table and it wasn't a pretty sight. I had to act quickly. I wrapped my arm around Kalvin and maneuvered us around the many tables, grabbing a bus-boy bucket we passed on our way out the door. We made it outside. Barely. Kalvin threw up safely in the bucket...outside of the restaurant! I think the embarrassment, and the fact that no one likes to throw up, has made Kal stave off sweets. We thought this was sort of a good thing at first and didn't make a big deal out of it. Whenever we drive by the Cheesecake Factory or someone says the word "cake," Kalvin will begin to groan and put his hand up over his mouth and groan some more. Then a little chuckle. But part of me knows he is serious and we won't be dining at a Cheesecake Factory restaurant in the near future. We hope this lack of eating is just a phase that he will soon grow out of. After all, how long can one really survive without chocolate?

Lately though, Kalvin has been eating very small meals and his weight has continued to drop. He took one look at his Easter basket and said, "All chocolate? That's it? Ohhh, I can't look at it!" and he walked right past it. Meanwhile, Finn was all ready half way through his first chocolate Easter bunny! I had to wonder if the baby aspirin Kal has been taking since his cath lab was making his stomach queasy. It is small, but so is he. This is just not the Kalvin we know. Not even close.

As the day went on, Kalvin became more lethargic and his face turned a pasty white. He took two or three bites of his Easter dinner - mostly because he was trying to mimic his big cousin, Logan. As we went upstairs for bed, I decided I would weigh him. I was shocked at the numbers I saw on the scale. He had dropped from seventy six pounds on January 16th to sixty six pounds on March 31st. Wow, ten pounds. That is a lot.

The next morning I called his pediatrician and made an appointment. Then, I did something I don't think I have ever done, I called his cardiologist. I was assured that his weight was not a problem as long as it doesn't continue to drop and that it is a result of eating less and being more active. And then I was reminded that; after all, this is a good thing because he was in the upper range weight measurement for his height. The doctor also said his symptoms didn't sound like a cardiac issue. Phewww. If the stent had moved, which is highly unlikely, (but you know how I feel about statistics after we became the 1 in 100) we would see breathing issues. Serious breathing issues. I explained, embarrassingly, how I never call them and moved on to the pediatrician's office where I don't even have to spell my long last name anymore we call so frequently.

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BROTHERS

OUR MIRACLES

Kalvin was born with d-transposition of the great arteries (TGA), VSD, Coarctation of the Aorta (COA), pulmonary stenosis. Kalvin underwent 8 hours of by-pass surgery to correct his defects when he was 5 days old at Children's Hospital Boston. Kalvin has had two catheterizations to correcton his COA; one at 3 months old and another at 9 months old. The first one was unsuccessful and resulted in a damaged femoral artery in his left leg. His second catheterization was a success! As a result of his damaged femoral artery, his left leg is now about 1 cm shorter than his right and also has less muscle mass. Kalvin has received PT since he was 4 years old to help his coordination and OT to help his delayed fine motor skills. Kalvin also suffers from anxiety and has from a very young age. Kalvin is a well adjusted happy boy who doesn't slow down. He loves boating, beaches, baseball (Red Sox & Indians), football (OSU & Patriots), hockey (Rangers & Bruins), soccer and dancing to music. Kalvin is extremely active participating in baseball, soccer, karate, swimming, skiing, skating and piano lessons. The role Kalvin takes most seriously is that of a big brother. When Kalvin was five years old we were finally blessed with another baby boy, Finn (heart healthy). Finn is a miracle all his own. Finn is full of spunk and makes us all laugh on a daily basis. Kalvin is always looking out for Finn and trying to engage him in play. They are truly the best "medicine" for each other.

Thanks for Stopping by

Most that know me, know I love to talk about my children and most know that Kalvin, my 7 year old, had heart surgery when he was a baby, but that is probably all they know about Kalvin's heart. Once Kalvin entered school, I found myself explaining to the teachers and administrators that Kalvin's struggles were most likely a result of 8 hours of bypass surgery at 5 days old. Recently, I was introduced to some other "heart moms" and we began sharing stories and I found myself reliving Kalvin's surgery and all the experiences that came with it. It was amazing to me how far back in my mind I had actually tucked away many of the experiences, but how easily someone else's words could transport me instantly back to a certain place and time. I found it somewhat comforting to share the stories and relive the experiences and it seemed to help the other "heart moms" as well. I was sharing information, links, and pictures I had gathered and thought, "Why not put this all in one location and maybe help some families that I dont know or haven't met yet." And thus began One in 1 Hundred.